View on Cancer

Until the final moment he kept believing in life and was an inspiration to his surroundings.

Tot het laatste moment bleef hij geloven in het leven en was hij een inspirator voor zijn omgeving.

Amsterdam, 27 februari 2008

Back in 1998 I climbed the Mountain Sabalan (4811m) in Iran. I just read my journal from that trip again and it reminded me of my heavy trip last week.

With a group of seven and one professional mountaineer we ’shuffled’ uphill through the snow. On the top we should find a frozen volcanic lake, but during the climb we could not see the top, because it was flat. Each time when we thought we saw the top, we got disappointed again about the ‘next’ top.

At 4300 meter half the group was too sick to go any further. We decide to find a place to stay overnight. Aziz, our guide, found a little flat piece half under a rock, but not far from a deep cliff. We ate oranges to empty our stomachs and reduce the height-sickness a little bit. We threw our sleeping bags on a piece of plastic, which covered the snow, and went to ‘bed’.

Breathing is hard at this height and I remember seeing the moon moving throughout the night from right to left. I enjoyed the view over the mountains around us. The world was laying at our feet, the view was gorgeous, but trying to catch sleep while almost hyperventilating is hardly possible.

That is what I had to think of last week. Although the pressure on my left lung was reduced by a small drainage last week, I was still tired and easily out of breath. I started with external oxygen on Monday expecting to feel better on Tuesday morning. But after my usual swim in the hotel, I had to be helped back to my room. I could not move anymore. My lungs were too much under pressure again.

The nights were like the special night at Mountain Sabalan, no air, difficult to breath and impossible to fall asleep. I felt fine as long as I laid down quietly and did not move. So that’s what I did for two days, getting more and more tired from not sleeping.

Finally I went to the hospital on Thursday and immediately got a drainage. The very same day 2 liters came out of my left-lung pleurae and during the night another 2 liters. So within 24 hours I lost 4 kg of weight, but I did get my air back (so a bigger air-bag). I feel so much better now, we just have to see of sticking the pleurae is going to work to avoid the fluid to come back.

In the meantime my hospital room is completely decorated with photo’s, flowers, a sunny balloon and a count down calendar for the number of days that I have to wait to see Jenn and the kids again.

Katy called me today. I really miss her!

Joost

It’s not the type of weekend you would sign up for. After a hectic week with two hospital visits for a pleura drainage, blood-transfusion and PET-CT we were expecting results from the scan on Friday afternoon, still in time for Jenn to cancel or change the tickets to the US.

The results were not good. Four new metastasizes have been found outside the bones! That’s scary and was a great shock for us. One of these spots had lit up in the November scan as well, but was identified as not significant at that time. Well, unfortunately, that did not seem to be accurate.

Details will be worked out by Paul this week in direct contact with the oncologist. This will very likely include a new medication regime. And of course, if better drugs would exist with less side-effects I would already have had them, so it can only become harder for the body now.

Next to the bad news we also had neutral news and good news. The neutral was that no cancer cells were detected in the pleura liquid that had been taken out, but no conclusion can be drawn from that. Neutral news, means useless, something like "Paris Hilton photographed entering the court-room". Yeah, so what?

The good news, and this is really astonishing if the overall diagnosis is ‘progressive’, is that it seems that the bone-metastasizes lit up less than on the previous scan. This would at least mean stabilizing, if not cancer spots being in remission. To early for a party, but this is at least a newsflash.

This is also the kind of miracle I need every now and then to get the confidence back that I can still win this race. Winning means that I decide how we run the race and not the oncologist nor the cancer.

We decided Jenn and the kids still would go to our family in the US. For the last week I have not been able to play the daddy-role that I would like to play and that really started to hurt me. Also for the kids it would be good to be ‘on holiday’ and be in a completely different environment for two weeks playing with their cousins 24/7.

Katy was completely ready for the trip. She wore her favorite pink skirt, had her Dora backpack and her little make up box. In the plane she behaved like a real traveler. ‘You would have been so proud of her’, Jenn said to me over over the phone after their arrival. Sam is easy going, as long as he can move around and jump on mama’s lap. So that’s what he basically did for eight hours. Pour mama.

I was really sad seeing them go. When they left I played the song ‘Ain’t no Sunshine’ a couple of times and cried for about half an hour till my brother and sister came in to comfort me. Soon I felt better and I started to realize I needed this outburst of emotion. I needed this two-week break even more than I realized. I hated it that I could not be the daddy that I wanted to be. Reading a book was getting to hard, since the kids would comfortably sit against my belly and I would not be able to breath and read anymore. I hated it that the illness suddenly became so visible.

When we arrived at the hotel I first sat down in a lazy chair outside in the sunshine. Relaxation started. I did not have to do anything anymore. I did not have to be anyone anymore, I could just be myself and get myself taken care of. "Ask, ask, ask whatever you think you need or makes you feel more comfortable. You need it now!", Maud told me when she and Tom were doing the kick-off exercise for this retreat. I fell asleep halfway, but did not want them to go yet. It calmed me down knowing what the main purpose was of me being in the hotel; return to my deeper self, find emptiness and peace and not worry about anything at all.

The other goal is to increase physical strength (mens sana in corpore sano). Since today I am having oxygen in my room, which helps me mainly during my sleep. You don’t realize how much energy it costs to breath, until you have a lung-deficiency. Trying to get enough air in kept me awake at night and made my heart work twice as hard. That’s both not good. So soon I should be able to swing and bike again, carefully, and hence start to use my weakened muscles.

Thank you all, by the way, for your extra attention emails an voice-mails as a reaction to one of my last blog entries. For this week I am going to take it very easy and won’t have any visitors. what I look forward to though, is going to the concert of Verdi’s Requiem on Friday with some fraternity friends. I’ll bring my mobile oxygen system and a wheel chair and see what the effect of a life classical concert has on me now as opposed to fifteen years ago. My ears must have changed.

Is it a myth, by the way, that granddads always have big ears? Do ears really continue to grow. Granddads must be good listeners then!

Joost

Is there only one way to look at cancer, one view? I don’t think so. But keeping the spirit and hopes up increase the changes on a good outcome, that is for sure. And, as said often before, there is so much you can do yourself to play with the odds.

This week it is tough though. I just got back from a long hospital day with a PET-CT and blood-transfusion. Normally the scan would not bother me so much. I still believe I am the stronger one. So why is it suddenly getting so much heavier on me and Jenn ? Probably because the symptoms are starting to really limit me in day to day life. And the symptoms cannot only be assigned to side-effects anymore.

We’re nervous. We expect the results tomorrow and based on that we’ll discuss with the oncologist if I will need to switch medication again. Well, that’s the positive side, there are still alternative treatments available. And let’s not speculate on tomorrow’s results. It just shows that the more visible the signs of the disease become, the more scary it gets. The more difficult it is to stay positive and to do things that keep on moving me.

I still work very hard to do the little things that I enjoy. Little walks, playing two songs with the band two nights ago, building a new website (announced soon!) and reading books with the kids. But just that is getting harder. Katy sees that daddy is more and more limited in what he can do. She feels there is something going on. She is showing some physical signs that we believe are stress-related. Part of it will be her age, but we’re sure she is extremely sensitive for the situation. She is protecting me like she protecting her Mousy. She kisses me like she really believes she can change the frog into the prince that she can marry and that can carry her up a horse.

This is changing my view on cancer. It is easier to switch off knowledge than pain and discomfort. You need a ‘functioning body’ in order to have your mind work for you. Knowing that you have cancer is one thing, when it starts to limit you in your day to day life than that is another story.

I start to feel sorry for myself sometimes. It’s like I need more understanding and comforting. For months I stimulated Jenn to take the kids to the her parents in the US. This Sunday they are flying and now I don’t like it. Not that I want them to stay, no I just want be felt sorry for. I just want to feel crap that I cannot go, that I have to miss my kids for two weeks. At the same moment I will need the two weeks ‘off’. I will go to Kuur & Herstel and fully concentrate on what I can do myself to get better. Take enough rest and go in the water or steam-bath whenever I feel like. I won’t have to play the father’s role or the husband’s role. I can just concentrate on myself.

This is a very double feeling, we realize. Jenn wants to stay for me and I want her to go for her, still both with mixed feelings. We talked about it a lot together this week. They will go, but we both just admit that it is also very hard for both of us.

It’s like I need to comfort the little Joost, crying because he feels left alone. Maybe I am touching on a deeper reason for the existence of this cancer and Jenn going to the US is just the trigger that makes it all come out. Maybe my body is just reacting with all kinds of discomforts to call for attention.

We don’t know. All we know is that it is okay to feel sad and afraid every now and then and that we ‘just’ need to make sure to stay out of any negative spiral. We’re sure we will with all the support that we still feel around us. Please keep on cheering us up and motivate us to keep going. We need it!

Soon we will move this Blog to a new website where we will increase the interaction with the readers, friends and family, but also other people being in similar circumstances. I really enjoy having this writing as an outlet for my emotions.

Whatever the message will be tomorrow, we will continue to fight. We have too many beautiful people and things around, nothing can take that away from us!

Joost

It all started out with the pleura-liquid, simply some liquid around my lungs, slowly starting to attack my breathing. In the meantime my main cold and throat-infections disappeared and I stopped the poisoning medicine. It’s maybe not fair to call it poisoning, although in fact every chemical is in a way not natural to the body. The medicine I was using was a immune suppressor, aiming at a specific cell-division tactic of the cancer cells.

Not until my symptoms started to be seen as potential side-effects, we decided to first half the dose and then quit completely. There is, however, one thing bothering me. The reasons to start this medication did not all seem to be too valid anymore after a few weeks. We expected increased tumor activity, but the PET-CT did not show any progression. We expected the LDH Blood-value to go down, which it didn’t.

I remember the most difficult thing about running a project is knowing when to pull out the plug. When you prepare a new product launch and half-way the development stage you start to get doubts about a successful outcome, it is very very difficult as a project leader to recognize that and to take action accordingly. Even more so if the facts that you based the calculations on to get project approval have changed in the meantime. Dare to step out of your narrow-minded project reality every now and then and check the preconditions.

This is how I feel now about this experimental immune suppressor. Should I have been more careful? Should I have been more alert? Or is my oncologist right that despite of this extra medication the cancer started to show progression. I simply refuse to believe that. Call it naive or stuburn. Something inside of me is telling me that I have dragged it too long. So now is the time to recover and with every illness, recovery always takes way longer that actually getting a disease. This would mean just to be patient. Okay, I’ll try.

But the last three weeks were hard. My lungs were getting more and more under pressure and I started to be out of breath during the nights. This weekend was the worst, so I called in the hospital this morning and two hours later I was there for a check-up and pleura-drainage. In first instance I thought I would have to stay for a few days for the drainage, but my oncologist suggested first to do a small drainage on the left side, which was the worst (estimated 2 liters of liquid as opposed to 1 liter on the right side).

The punction itself was not that bad and took only 15 minutes. They took 1200 cc out, which means I just lost 1.2 kg of weight. Shit! A well, I have to realize that I still have another 2 kg of unfair weight in my body, holding up my breath instead of forming a nice cushing on my bud. Spiritually I am still there. I am convinced this is all shitty side-effects, winter-depression, flews and what every inconveniences are bother me is tough, but not scary.

Mentally though, I have to admit, last weeks were tough. Things were just going better and I had enough signs that the metastisized cancer is not in progression (which is a miracle or an accomplishment in itself). And yet, doubts came up about the reasons for the lung issues and the eating problems. I had to quit my diet, my stomach and intestines started to protest. This all might be directly cancer related. My oncologist is afraid of that too. But then I think he is the hammer looking at the world like everything is a nail. Not fair towards him to say that, but damned I hope I’m right.

So I am writing this entry while in the hospital waiting for over three hours to get an ambulance back home. I’ll be back here in three days for a PET-CT and a blood transfusion. Of course we’re all very anxious to get the results from the scan. Did it spread or is it dead? Or something in the middle, because I have not been overwhelmed with concrete medical conclusions over the last year. A spot means there is very likely a spot. Not a spot means there still might be a spot. And then picture the expensive machine and radioactive glucose they are using to get to conclusions like these.

Have I mentioned Hyppocrates before?

Joost

Was it the weather or the fact that Jenn and I were completely by ourselves for two whole days? Although I needed a lot of her assistance we really enjoyed it. A ‘high-tea’ outside in de the woods along the water, a beautiful car-ride through the fields. Of course I had to do some swimming. And we closed of the weekend by going out for dinner together since a very long time.

For the rest of the weekend I slept so much that Jenn had time to pick up things she has not been doing for a while, like working in the garden. She’ll tell you about her new motto in her next entry after she cleaned out the corner where Jones (the guy on the photo) thinks his territory is.

We miss the kids we’re so happy to see them again tomorrow.

Joost

“Just imagine that I am cutting off the sick and old parts”, Antonio said.

Getting a haircut is like celebrating a new start, a new fresh look. No important customer to go to, I am not going to a party this weekend and yet I felt like having a new coup. The best way to get better is to act better. Get dressed, get fresh and shaved and go outside. Where some days I really could not care less about how I looked, other moments it is giving me a mental boost to dress up.

I was not able to walk to the hairdresser for the last two weeks. I could not even walk to the kitchen to get my own cup of tea. But after the blood-transfusion yesterday I got a little bit more energy. And the rest? The rest of the energy was coming from my mind. I just needed to get out. I wanted to prove to myself that I could walk into town again. The fact that I quit my immune suppressing medicines yesterday helped the whole feeling. Reducing medication puts more responsibility on myself, I got to prove that I can do without. I got to get my muscles back to work. It’s amazing how much muscle volume one can loose in only two weeks! It’s like frequent flyer miles: “Use it or loose it”. Also my digestion system needs to work a little bit more elegantly.

So this morning I had my tea at the hair-saloon, talked about yoga and meditation and about how people nowadays don’t take time for themselves. I walked back through a tough February windstorm and got back home to receive the two biggest compliments a man can get. First Jennifer was all excited about my hair, mainly because now the white comes out better (I lost my dark curly coupe!). Well, she likes white hair, also her own grey spots, but without the medicine it’s not going so fast for her.

And then Katy came to me and gave me this huge hug. She kept on staring at my head, while she grabbed a book to read together. Before we sat down she said: “Papa, jij bent weer beter, he?” (Daddy, you’re better again, aren’t you?). I said “Yes, sweety, almost.”

Now I knew why I needed that haircut.

Joost

No, this was not an easy week. Although we had overcome the ’shock’ of possible metastasizes around the lungs, my physical shape rapidly went down. Fatigue, not being able to get my own cup of tea, muscle-ache, bone-ache, lost appetite and diarrhea were suddenly back. And Katy felt it. It is amazing what strong senses little kids have. Parent sad, kid crying, parent concerned about kid for not understanding why, kid even more upset.

Everything in life is tightly connected. One more hospital visit and thorax photo did not clear up anything. The downwards spiral is just a consequence of many factors. It might even still be one of the viruses that has infected all of us around here this winter. But I am not only more receptive, it also hits my body much harder than a more healthy body. I am continuously living on the edge of my energy- and fat-reserves. One disorder and the system collapses. In no other body is the everything-is-connected-to-everything principle as visible as in a cancered body.

For me this is another evidence of ‘The Zero Point Field’, the everything connecting energy field. The book I am reading now, “The Field” (by L. McTaggart), is a collection of many scientific research programs. It is about how living and inert entities are connected together with the same ‘central’ energy source, sometimes in history called ‘The Holy Spirit’.

Somehow I turned the downwards spiral around again. By the end of this week, when I came home from the hospital completely exhausted and feeling sick, I ate some not-on-my-diet dark brown bread and cheese and my favorite Thai Tom Yam soup. It was just the kick that I needed. On Saturday, for the first time in ten months, I got out of town without going to the hospital. Instead I was picked up by some friends to have a (tiny) walk in the woods. It was a gorgeous sunny day, we had a drink on the terrace, while Katy was playing in the playground. The smell of the trees and just being outside made me forget all about the pains and discomforts I thought I was suffering from.

Also the swimming pool and steam-bath at Kuur en Herstel this morning made me feel fitter again. When we came home (I needed a driver, since walking was still to heavy for me), we found Katy and Sam all dressed up. That, once more, made me realize how worthwhile it is to turn the spiral upwards all the time.

There was the spirit, my two Holy Spirits.

Joost

“Although the pleura fluid does not contain cancer cells, the origin is very likely cancer related.”, my oncologist said. I’m afraid we have to get used to this type of unsatisfying news. We got a similar answer to the bone-punction back in May of last year. I have no primary tumor in the kidney and still the doctors are “pretty sure” that the visible metastasizes in the bones originate in the kidney. Very uncommon, but not impossible.

Sometimes it seems we’re back in the times of Hippocrates, about 2500 years ago. Hippocrates’ medicine was fully based on observation. An important difference with today’s medicine is that the ancient Greek did not have x-rays or radioactive PET-scans at their disposal. Despite of that, their observations must have lead to similar vague conclusions.

I had scans to see how bad the metastasizes were spread out. When I asked to repeat that same scan a few months later to compare and measure ‘progress’, I learned that the inaccuracy of the scan would not allow us to draw any conclusion about pro- or regression. Human interpretation is still more sophisticated than the machines we have in the 21st century.

In ancient times no one expected the doctor to make you better. The doctor could only observe and the patient had to do the healing him- or herself. That is putting the responsibility where it belongs, in my opinion. If you wanted to overcome a disease, you had to live a healthier life. No Prosac to mask underlying causes, but sport and diet to undo the fungus that was causing depression.

Of course Western health-care has developed many good things, and our life expectancy has gone up due to effective therapies and medicines. But could it be that we became so over-confident in our doctors that we don’t pay enough attention to what we can do ourselves as patients to prevent and overcome diseases? Aren’t we sometimes relying on conclusions that have the same predicting value as the Delphi Oracle? Shouldn’t we rely more on ourselves, what our body tells us?

So, how do I feel then? Up to now the fluid around my lungs did not really bother me, but as of today it slowly starts to hit. I am exhausted from walking up the stairs. I’m suffering from sinuses infections for about six weeks now. I still try to swim every other day, but physically it’s all getting a little hard.

Mentally I believe I have dealt with last week’s bad news on potential cancer cells around my lungs. There is only one main indicator of how I am doing: what my body tells me. Vague pathology results like “high protein fluid with unidentified origin” don’t touch me anymore. I have had too many of those rare, “we don’t know” type of conclusions. I need to focus on my body now, make sure I keep my strict diet and sport enough in order to keep resistance against the infections. Simply stay in contact with myself.

“Man is measure of all things” (Protagoras)

Joost

Today is the big day! Sam is turning one and Katy is so excited. She knows what birthdays are about, so she made the cake yesterday with Ans and hung the ‘slingers’ with Jolanda and Cees. We also had to sing.

And Sam? He is all over is new ‘bakfiets’, like the one that his parents got married in. And don’t underestimate the chocolate cake. Sam is a sweet-monster.

It’s strange to realize already one year passed by. So much has happened in his young life.